I Want to Run!
by Shaun Dailey
Ihave Charcot-Marie-Tooth (CMT) disease and when I walk, my feet flop as if they’re asleep. My mother and sister also have CMT, and my mother always has blamed herself that she “cursed” my sister and me with this genetic disorder.
Growing up, my sister and I sometimes hesitated to talk to my mother about some of the things we were going through with CMT, for fear of her breaking down into tears. But because my mother was this way, tiny roots of motivation grew inside of me that one day bloomed into something beautiful that made my mother feel as if her burden was lifted.
A very happy Dailey during the running phase of Georgia’s Peachtree City Triathlon last September.
Many people with CMT have a hard time walking — but I wanted to run! It always seemed that jogging or running would never be an option for me.
When I was 17, I went bike riding with my brother-in-law and his friend Sean Harper, who worked for a company specializing in orthotics. Sean told me he could keep my feet from flopping around by using AFOs (ankle-foot orthoses), which are big plastic ankle braces that go up the back of my calves. He made me some AFOs that made walking a lot easier, but running still was way out of the question.
Instead, I got into racing motorcycles, which didn’t require a whole lot of lower leg function. I took this sport all the way
to the semi-pro level, competing all over the East Coast and racing in the Grand National Cross Country series. I had special AFOs made that fit in my boots, stabilizing my foot so I could shift gears and use the foot brake. I did real well in this sport and have the plaques and X-rays from broken bones to prove it!
Despite my success, my mother’s heart still carried the burden of my sister and me not being able to do everyday activities such as running around chasing our kids through the yard. Not to mention, she didn’t like me getting hurt on the motorcycle.
One day I was invited to do a team triathlon (run, bike, swim), with my part being the swim. I thought that this would be perfect since I didn’t have to run, but I hated every second of it. I
thought I was going to puke from the
fatigue.
But something hap-
pened that day. A strong
motivation came over
me to find a way to
move my body faster
than a walk. I searched
for someone else with
CMT who was an ath-
lete, hoping they would
know different methods
to enable a run or jog.
Unfortunately, this
search hit a dead end.
My next effort was to study the anatomy and biomechanics of
the foot and ankle. I learned from one of Sean’s coworkers, Joe Carder, that if I had the right shape on the bottom of my shoe, that it would somewhat mimic the gait of a normal person
Joe studied my gait to help me devise the perfect rocker shape and foam angle. Revisions were made time and time again due to the odd movements of my particular foot.
Dailey running up the beach after completing a triathlon swim.
In June 2007, I made drawings and templates and took them to Sean. We cut off the sole of my shoe and layered in heavy-duty foam rubber, then glued the rubber sole back on.
The last time I’d run was in elementary school, when I raced my best friend Tommy during recess. It had been 19 years since then. I put on my new shoes and it was breathtaking what happened. I ran! I didn’t run as fast as I did against Tommy — but still, I ran! I can’t tell you how emotional it was — the feeling was overwhelming!
I couldn’t wait to tell my mother what I’d accomplished, but I wanted to unveil my success in a storybook, magical way. There was a triathlon coming up in my town three months down the road, the State Sprint Championships. As I trained for this event, sometimes I’d get choked up thinking about crossing the finish line after a 3. 2 mile run.
On race day, I woke up at 5:00 a.m. and headed to the venue. I’d told my
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